3 months ago, my husband suffered a brain bleed where a golf ball sized avm was found on his cerebellum. On Feb 29th, a craniotomy was done to remove the avm. He initially lost almost all function to include, speech, mobility, and some vision. He has since regained his speech, although he seems much slower to talk and process and is learning to walk with a walker. He began with severe double vision which has subsided and is now experiencing blurriness in his left eye. The distortion in his vision is making his physical recovery difficult. Has anyone experienced similar issues with their eyes or recovery as a whole. I am interested in any insight you can share.
I don't have experience with a cerebellar AVM or visual distortion, but I want to tell you that 3 months is no time at all in neurological time, especially after a bleed. It sounds like your husband is making great strides, and it's still early days. There's every reason to expect that he can continue to improve. Docs used to give a 2-year window of recovery time, but research within the past 20 years or so says that people who keep working on their recovery still see improvements up to 10 years after surgery. (That's not to say that recovery will be slow...just that there will be more improvement after you think you've hit a plateau.)
I hope others here have tips on dealing with the vision problem; I know it's frustrating when one problem holds you back from working on another. If the problem is mostly in one eye, has he tried using an eyepatch on that one while doing his physical exercises?
Hi, I had a bleed in my cerebellum too, I was just 39 so I can sympathize with you and your husband. My AVM was small, but harder to find because of that. My brain surgery was 5 months after my stroke because of this. I had complications after my surgery and had to walk with a walked too, but then was able to walk with a cane and now without. I was told that the cerebellum is “more redundant” so faster to relearn some things. I still feel that I’m much slower at processing language and responding to questions than I was before all this, and that can be frustrating, socially especially . I’ve been able to go back to work, but part time, and I constantly remind my boss that it takes me longer to process info. I haven’t been fired yet. It also helped to have some cognitive testing done to confirm that I’m not crazy. While my speech seems fine to people I’m just slow sometimes. Anyways, feel free to reach out to me, although I’m not on this site as much as I used to be.
Thanks for your response. I know every case is different but am interested in your walking recovery if you don't mind sharing. Where there any special things you did to enhance your ability to learn to walk again? Also, what was the timeframe you experienced going from walker to completely independent. My husband had his bleed and surgery 8 months ago and has gone from not being able to sit up at all, to wheelchair, to walker, now cane. I am just curious as to how quickly the brain relearns the signals to assist with walking unassisted. Or at least in your situation.
Thanks again. Glad to hear you are doing well.
My bleed was not in my cerebellum but I have vision loss as a result. My AVM was in my occiptal/parietal lobes. I have a visual field cut to the left in both eyes. It does make physical recovery a bit more difficult. It makes me much more dizzy and unstable when I walk. Even 8 months is very little time in terms of recovery from brain injury. I'm over 4 years post bleed and surgeries. While my vision has not improved and most likely never will, overall I'm much better than I used to be. Dizziness is still an issue occasionally and I'm still a bit unstable when I walk but it's much better than it was in the weeks and months immediately after the bleed. Processing information is slower but hardly noticable to most others. Your husband will most likely continue to improve but it's a marathon not a sprint.
Hi Survivor Wife-I can relate almost exactly…except for the time-frame; it’s been over four years for me. With more and more time, he will get much better.
Of course, he’ll need to work for his recovery, but patience is also important.
Everyone’s different in symptoms and recovery; try not to compare, and stay patient. Deep breathing works well for me
Hello. I was 21 when I had AVM and my first surgery. Now I'm 28 and still have problems like you descried. I walk with a walker, double vision makes me use a patch, speech is slow and not clear. I don't give up though, even though sometimes I want to. I wish you and your husband patience!
Hi mine is on the right side of my cerebellum haven’t bleed thankfully, but sometimes I have this thing called aura, and tunnel vision.
@SurvivorWife @Larisa_Diephuis Could you tell.me who your neurosurgeons were? My 9 year old son had an AVM rupture in his cerebellum on December 3rd, 2019. It has been a long 3 months but he has made an astonishing recovery! He is fully walking, talking, and eating on his own. Doctors at first told us that it was operable but they wanted to wait a few months for his brain to heal and settle down, so they had scheduled an angiogram/embolization and surgery for the beginning of February. So in February they did the angiogram and said that they were only able to embolize about 60-70% of it and needed to do another angio/embolization before the surgery, so they scheduled another angio and surgery for last week (beginning of March). He had the angio done on Wednesday of last week and everything went well and they said that they were able to get it about 95-99% embolized. While we were recovering, our neurosurgeon came in and said that he did some research and saw that the mortality/morbidity rate in an AVM resection in the posterior fossa and cerebellum was about 20% which was more than he originally thought, so he started to tell us that he thinks we should now search for a neurosurgeon that has more experience with removing posterior fossa/cerebellum AVM’S and cancelled our surgery that was scheduled for last Thursday… so now we are heartbroken as we thought that this nightmare was finally going to be over and we would be recovering and moving past all of this… Can anyone suggest any neurosurgeon in the US that they know of that have successfully removed AVM’S in the cerebellum? We are desperate! Thanks so much!!!